HIV Community Based Research

Bringing Community & Academia together through research

Community Based Research – what is it?

Anyone can participate in community-based research!

Community Based Research engages community members with academic researchers in a mutually beneficial relationship to ensure community interests are included and protected in projects while ensuring scientific rigour is observed during the research process.

We work collaboratively with ASOs and academic institutions to identify and coordinate a wide-range of initiatives that incorporate community-based research principles and provide much needed “knowledge to action” that benefits the HIV community.

Community-situated CBR projects offer a great opportunity to provide evidence-based research findings to support your next funding application!

Please check out the NEW POSTS BELOW for current information!

“PRA+” Peer Researcher Mentor Training – the first of it’s kind in Canada!

Positive Living BC and partners, developed and presented the very first Peer Researcher Mentor Training December 8,9,10 in Vancouver BC.

PRA+ Peer Researcher Mentor Training 1st Alumni

The concept of Mentor training was developed in response to requests from community researchers during the recent Focus Groups that were part of the Peer Worker Support Project.

The three-day training focus was on practical implementation of critical thinking; communication skills; dealing with micro aggression; conflict resolution skills; intricate boundary issues awareness; and understanding the institutional side of research (among many other topics covered). 

Another milestone was achieved by providing a “living wage” in the form of a generous honorarium for all 10 participants to attend the training and be compensated for their time appropriately. The hope is that this precedent will establish another organic standard for the HIV Community Based Research industry in the near future, where new research projects include a budget line to appropriately compensate HIV community researchers for their capacity building training.

Congratulations, successful graduates of the first PRA+ Program!

The Rise of the Peer Worker!

Employing people living with HIV as peer research associates is gaining popularity today as Community Based Organizations and researchers attempt to integrate the greater involvement of people living with HIV more meaningfully into new research projects.

The HIV community is responding by promoting the development of industry standards for employing workers with HIV to adequately provide support based on the unique needs of this group of workers. Often unskilled in the conventional sense of their job descriptions, peers bring accessibility to the community, rich relationship opportunities and subject relevance, and personal history to their work. Specific supports are required to address the emotional, physical, financial, and personal intensity impact this employment has on these workers. By openly discussing and including the input of peer workers to establish industry standards for support provision that can be adapted to various forms of peer employment, we will offer a valuable resource for researchers, community organizations, Health Authorities, and others who seek to employ people living with HIV on research projects.

A series of four focus groups were held in Vancouver BC over the past 18 months to engage PLHIV peer workers, researchers and CBOs who employ peer research associates, and academics/research partners with an interest in meaningful engagement of the HIV community, to discuss challenges,successes and supports in research employing peer research associates. Feedback was coded for themes, analyzed, and presented as an open access “tool kit” of options for providing support to peer research associates engaged on research projects.

It is hoped that the “living document” tool kit produced will be added to by the research community, as new support provision ideas come forward. The creation of an organic, industry standard of support provision for peer research associates is clearly indicated.

The growing popularity of community engagement in research through the employment of peer research associates, comes with inherent challenges to providing appropriate support. Meaningful engagement of the HIV community comes with the responsibility of doing no harm. Creating new,and adapting existing support tools is essential for the long term success of engaging peer research associates in HIV research.

Click here to view the report. Peer Worker Support Project v2

Canadian Association of HIV Research presents “Rise of the Peer Research Associates”

dialogueVancouver will be the host city for a diverse group of Peer Research Associates (PRA) from all across Canada taking part in a National Dialogue on Support Standards for people living with HIV who work in the HIV research field.

CAHR and the Public Health Agency of Canada are sponsoring the participants of  this incredibly important event, where GIPA principles are embodied and employed during the development and delivery of this Dialogue Session.

Terry Howard, Director of Community Based Research for Positive Living BC will facilitate this unique opportunity for PHAs from across Canada to come together on June 18, 2014, and share their thoughts, experiences, and input on the development of support standards for PRAs in Canada.

The summary of the Dialogue Session will provide the basis for an open access online toolkit that researchers and peers alike can consult for tips on providing the basic support services required when employing PRAs on new (and existing) research projects.

Look for the online toolkit here on this website in the near future!

Researcher Confidentiality in question?

A recent ongoing legal case in Canada (Parent/Bruckert v. Magnotta) is putting the protected confidentiality of researchers into question.

It is quite possible that a researcher can have their research data subpoenaed by a prosecutor with evidence to suggest criminal activity (i.e. non-disclosure of HIV status)

Please join us for this informative Lunch and Learn lecture

Lunch and Learn poster

CHIWOS is hiring two new Peer Research Associates!

The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) is a 5-year, women-centred, community-based research project. It brings together researchers, clinicians, community partners, and women living with HIV from across Canada with the goal of improving the care available to women living with HIV in Canada. CHIWOS study objectives are to investigate whether women are using women-centred care, and to learn about whether women-centred care improves sexual, reproductive, emotional, and women’s health outcomes.

With the launch now under our belt, we’d like to hire an additional 2 Peer Research Associates to join our existing team, one for the Lower Mainland and the other for the Interior. Please note the Lower Mainland position is reserved for a woman identifying as African, Caribbean, or Black Canadian (ACB).

For more information and a job description please see the CHIWOS Website click here!

Peer Worker Support Focus Groups


Vancouver BC, July 17th for Peer Workers and July 25th for Researchers/Providers

Peer Worker Support Standard Development Project


The initial plan for this project is to schedule two focus groups, one for peer workers, and one for researchers/health care providers. The focus groups will provide a discussion forum to explore what supports are currently in use, any gaps in those supports, and what kinds of additional supports are needed. We will draw upon existing models that can potentially be adapted to more appropriately support peer workers living with HIV working out of a CBO, and/or on a research project. Many existing supports have proven inadequate or poorly utilized by peer workers to the point of non-functionality.

This is intended to be the starting place to develop industry support standards in the form of a “tool kit” where new research teams or project directors can select support tools that fit their specific needs while becoming aware of the basic support requirements for peer workers living with HIV on any project/program. Once developed, this tool kit will remain a work in progress and will be regularly updated as peer worker support needs change and evolve. It is intended that eventual wide spread industry use and input from those who utilize the toolkit will organically promote its utility as the industry standard when developing projects employing people living with HIV.

The need for an industry standard of support tools when employing people living with HIV has come directly from the HIV community.”

The need for an industry standard of support tools when employing people from the target community has come directly from the members themselves. Peer workers; including peer research associates, peer health system navigators, peer counsellors, and other peer workers who choose employment to suit their personal circumstances have voiced their concerns on the inadequacies of predominantly social-work-adapted support systems that don’t meet their needs as workers. Some existing supports need merely to be modified further to accommodate the needs of peer workers, others need to be created intentionally and utilized systemically on new and existing research and program based projects. The excerpt below is the perspective of an experienced coordinator of peer research associates and eloquently describes his thoughts on the needs and gaps in support that currently exists.

Quote from Ben Stevenson- PRA Coordinator for the Food Security Study

From my somewhat limited experience supporting peer researchers, I can say that the biggest thing I was able to provide was authentic empathic engagement. I was always there for the researchers when they needed to debrief, hear their concerns and help facilitate getting their needs met or further bolstering the supportive environment they were working in (e.g. through talking to community organization staff or research investigators to provide additional resources (time, money or personnel) to help the peer through the situation). I made a concerted effort to do this too – I didn’t just wait for peers to come to me with ‘problems’.

We had lots of personal one-on-one conversations to make sure peers had safe channels to express their views as well as group conversations to facilitate peer team building, awareness building and solidarity.

I always made sure to emphasize that peers took seriously the practice of ‘self-care’ and always tried to assist or accommodate them in this regard, sometimes to the delay of crucial research deadlines, but for the benefit of the peer’s health.

One of the biggest problems I faced though was in hiring peers who were perhaps not ready for the job at hand and who faced continual psychological interpersonal or community-level barriers to full involvement with the work we were doing. Whether the case was having a peer not fully managing their drug addiction, not having fully processed the stigma and trauma of sero-converting amongst a First Nations community who were not understanding, or who had concurrent illnesses that were just too debilitating to prioritize the work at hand, these were instances were few supports would have prevented a ‘crash and burn’ scenario. It was more a case of not hiring the right person for the job, although in some communities, there are so few candidates among those living with HIV to be peer workers, that we had to do the best we could with hiring.

To help structure this on-going conversation, I’d like to throw an idea out there that we outline a continuum of supports necessary for peers at different levels of ‘work-readiness’, stratified by different levels of work intensity and scope (i.e. part time, contract work, professional full time), current obstacles being faced, and gaps that we hope to fill with newly designed support systems for HIV peer workers.

One of the support concepts I’d be interested in pursuing too is how to facilitate better self-care practices among peer workers. This is not to ‘off-load’ the issue from practitioners and researchers on to peers, but rather to be explicit about the fundamental limitations we face with lack of resources or strict institutional working environments.

Some studies suggest that finding ‘meaning’ in one’s situation is a crucial step to being ready for self-care with chronic illnesses or experienced stigma/oppression/loss. In this regard, I might connect self-care to the authentic empathy piece I was talking about earlier, and suggest that one great way of supporting peers is be making their work meaningful (MIPA obviously fits here) which is either done through, a.) providing more participatory avenues in decision-making or analysis, b.) tailoring work relationships to the individual and c.) connecting with people on a ‘personal level’ to find where their values lie in whatever peer work they’re doing (although maintaining boundaries becomes here) and d.) acknowledging how much emotion and feeling goes into and comes with this work.

Please contact me if you’d like more information on this project, or to be put on the list to receive the results!

Positive Women’s University Evaluation and Report

Check out the report on Positive Living BC’s recent Positive Women’s University

Held at Loon Lake, the University brought together a diverse group of women living with HIV for an educational, empowering weekend of workshop presentations and skills building.

See the full report for the interesting results and personal comments from the women who attended!

Positive Women's University Report

13Jun Positive Women’s University

For further information on this University and others in the works, use the Contact Me tab.

CIHR III Spring Funding Opportunities

CIHR-III (Infection and Immunity Institute) would like to inform/remind its research community of the following CIHR funding opportunities as well as events of interest.

Funding Opportunities

Team Grant : Health Challenges in Chronic Inflammation Initiative (Phase 2: Full Application)
Application: 2013-10-15
Application Notice of Decision: 2014-03-31
Funding begins: 2014-04-01

Planning Grants : Spring 2013 Priority Announcement (Specific Research Areas)
Application: 2013-06-17
Application Notice of Decision: 2013-11-01
Funding begins: 2013-11-01

Dissemination Events : Spring 2013 Priority Announcement (Specific Research Areas)
Application: 2013-06-17

Application Notice of Decision: 2013-11-01
Funding begins: 2013-11-01

CIHR Café Scientifique Program (2013)
Application: 2013-05-24
Anticipated Notice of Decision: 2013-08-30
Funding Start Date: 2013-09-01

Team Grant: HIV Cure Research
Registration Deadline: 2013-05-24
Application Deadline: 2013-06-26
Anticipated Notice of Decision: 2013-12-04
Funding Start Date: 2014-01-01

See the CIHR Website for details on these opportunities

CAHR 2013 Conference, CTAC event

CTAC would like to invite you to attend the following event:


Drafting a Treatment Access Bill of Rights for People Living with HIV in Canada

Thursday, April 11, 13:00 – 16:30 PST

The Westin Bayshore

1601 Bayshore Drive, Vancouver

Room: Cypress 2, Level 2


I would like to personally invite you our ancillary event. The event is open and no fee is needed to attend. We invite you to also circulate this to other HIV leaders, service providers, community members, networks and other colleagues who you think have not received this invitation.


The purpose of the proposed event is to provide an opportunity for community members, policymakers, researchers and service providers to meet and contribute to the development of CTAC’s forthcoming Treatment Access Bill of Rights for People Living with HIV in Canada.  Led by CTAC, participants will have the opportunity to explore rights and responsibilities related to fair and equitable access to a range of treatments, care and support for people living with HIV in Canada.


This forum will include presentations from several keynote speakers followed by break-out sessions as we collaborate toward a Bill of Rights. Participants of this event will be encouraged to provide their input on a number of key thematic areas contributing to aTreatment Access Bill of Rights, including universal access to healthcare, human rights and dignity, treatment decision-making, patient-centric care and compassionate access.


Registration is free but required:                       Please register online at


*This event will be conducted in English

CHIWOS Study Hiring Peer Research Associates!

The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) is a 5-year, women-centred, community-based research project. It brings together researchers, clinicians, community partners, and women living with HIV from across Canada with the goal of improving the care available to women living with HIV in Canada. CHIWOS study objectives are to investigate whether women are using women-centred care, and to learn about whether women-centred care improves sexual, reproductive, emotional, and women’s health outcomes.

Our BC CHIWOS Team has enjoyed a busy start to 2013! I’m happy to share that we are officially transitioning to the second phase of CHIWOS, the national survey phase, where we plan to enroll 350 women living with HIV from across British Columbia into our study beginning in May 2013.
In anticipation of roll-out in May, we are now initiating a hiring process to bring an additional 4-6 Peer Research Associates (PRAs) onto our existing PRA team. In our study, PRAs are women living with HIV who are hired and trained as researchers on our core study team, and who have experiences and identities in common with the study participants that they will recruit and interview.

PRAs will receive training in research methods, privacy and confidentiality, administering interviews, the CHIWOS survey, computer literacy, participant support, and self care. After training, PRAs will interview study participants over an 18-month period across BC’s five regional health authorities and the Oak Tree Clinic in Vancouver, and will be based in or around Vancouver, Surrey, Victoria, Kelowna, or Prince George.  

Please see attached for the job description and accompanying application form. All candidates are asked to complete and submit the attached application form via email, mail or fax to myself (contact details are below and attached). Applicants may also attach and submit a resume, although this is optional. The deadline for applications is February 15th, 2013
To download the application form, click here PRA Job Description_Feb 1 2013 (final)

New Web Pages Coming!

Public Health and HIV CBR

A brand new section is being developed for this website. Several new pages that will focus on promoting greater engagement between Public Health and HIV Community Based Research.

  • We will feature plain language tools on how to engage in successful research partnerships.
  • What kind of ethical challenges are involved and how do I deal with them?
  • An exciting new discussion board for CBR issues.
  • Helpful, recent CBR projects featured to describe our successes!

Look for the new pages at the end of February 2013!

Body Mapping Event in Vancouver – December 15th,2012 from 6-8 PM

“Take a Breath. Have a laugh. Sing a Song. Dream a Dream.” Elina, 2012


Please join us for an evening of art and story-telling in celebration of the “Body Mapping: Telling Our Stories Through Art” research project. In May 2012 six brave Vancouver women living with HIV came together to create their own Body Maps.

When: December 15, 2012

Time: 6:00 – 8:00 PM

Where: Potluck Café, 30 West Hastings Street, Vancouver, BC (*Across from Army and Navy)

Hors d’oeuvres and refreshments will be served. Please feel free to bring a friend.